Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Skin marks anyone?


  • Please log in to reply
14 replies to this topic

#1 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 05 September 2009 - 07:08 PM

I have been diagnosed with Limited/Crest Scleroderma now for approx 2 years.
Ever since my diagnosis, I have developed a purple/red marks underneath the skin, which look like a splotchy rash.
They are in my legs mainly, but can develop in both arms, they are more noticeable if I am cold. My rheumatologist first mentioned it about a year ago, I didn't think much of it at the time, but he checked if I had a pulse near my ankles, which I did.

I went to see a Dermatologist a few weeks ago, for another skin ailment, and he also picked up on it, but never said much.

I was wondering whether anyone else has something similar, I am quite sure it is Scleroderma related.

Many thanks
Summer

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 06 September 2009 - 03:26 AM

Hi Summer,

The marks you describe sound like what I get on my legs, so it might be 'livedo reticularis'. The link will take you to the Mayo Clinic's article which has a good photo in it.

My husband calls it my 'fishnet stockings' ;) and it is definitely more noticeable when I'm cold.

Warm hugs and a pair of hand-knitted leg warmers,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 06 September 2009 - 08:27 AM

Hi I think this the T in crest I have this in various places you can look it up on this site hope this helps Lynn

#4 summer

summer

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 06 September 2009 - 07:00 PM

Thanks Jeannie for the link it is much appreciated. I had a good look at
the picture, and yes I do have that, except mine is much more purplish/red.
They did mention Lupus, could be the cause, but I have limited/crest Scleroderma, do you
think that also could cause this.?

Many thanks
Summer

#5 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 07 September 2009 - 02:52 AM

Hi Summer,

My mottling changes color depending on just how cold I am, so I think it's more the pattern than the color that counts. I don't have Lupus, but I do have Systemic Sclerosis, so it's my guess that the answer would be yes, but what would I know? :lol:

I did ask my rheumatologist about it and its causes and he just said it's a vascular response to cold.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#6 ladyhawke

ladyhawke

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts

Posted 07 September 2009 - 03:56 AM

Oh wow....I have that to, but never really thought much about it. Now that I see the picture, it looks like my legs....I wonder if it is because of the sclero?? hmmmm. Wouldn't it be great if they actually "knew" things about this disease? I think I find it so hard to wrap my brain around the fact that so little is known about it, in this day and age.....sigh....
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#7 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 07 September 2009 - 05:36 AM

Never heard of Livedo reticularis. We just learn something new everyday. Thanks for the new term Jeannie! Mine are much, much darker and more irregular, but then I know for certain that I have a serious case of varicose veins and spider veins. I wish I could blame them on scleroderma, but when I look at my mother's legs, I know where they came from. :)

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 12 September 2009 - 12:34 PM

Yes, they are different. I also have both Raynaud's and livedo reticularis. I usually get the livedo around my knees, which is also where I first developed skin tightening. It looks like dark blue lace. It is not one solid color, like Raynaud's, and it never turns dead white. The skin between the "lace" remains a normal color; and it is not at all painful for me, whereas my attacks of Raynaud's can certainly range from totally numb to major yeowch.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 14 September 2009 - 01:50 AM

Now I know what the peculiar blue lacy effect I get on my legs, it's not painful like my Raynaud's but I've been noticing these changes for a while now. I don't like to wear a skirt because you can see it and anyway I'm warmer in trousers.

Buttons

#10 kelowna52

kelowna52

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Washington

Posted 16 September 2009 - 03:32 AM

Hello Summer, I have Raynaud's and I have a lot of skin discolouration on my legs, bruising under the skin and plaque like lesions. My hands seem to be purple most of the time now and they seem to be very warm a lot now. I find that strange with Raynaud's, because I understood that your hands turned purple when you get cold. I have a lot of body pain, migraines, fatigue, chest pain and the list goes on and on. My doctor's here in Washington state still can't figure out what's happening with me. Anyway I don't know whether or not that is much help to you but I do understand what your feeling, frustration for me big time.

Jackie

#11 kelowna52

kelowna52

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Washington

Posted 16 September 2009 - 11:22 AM

I really don't know what tests he has ordered, his nurse just said they were testing for quite a few things, so I really don't know at this point. Thank you for responding to my message.

Jackie

#12 summer

summer

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 01 October 2009 - 07:17 PM

Thanks for all of the replies, sorry it has taken so long to get back to you all. I do indeed have livedo reticularis, my dermatologist has just confirmed this.

I have asked whether they need to do any further testing, both my rheumatologist and dermatologist has said no. I guess I am going to have to trust them about this. Does anyone know whether I need to keep an eye out with this condition?

Many thanks,

Summer

#13 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 02 October 2009 - 04:23 AM

Hi Summer,

Livedo reticularis by Mayo Clinic says that it "can be a normal condition that causes no symptoms and needs no treatment. But it can also be associated with serious underlying disorders, such as lupus, anti-phospholipid syndrome or Sneddon's syndrome."

Mine seems to blossom only when my legs are cold. Since it does not cause me any problems at all (no pain, no ulcers) and since I have many other issues, my doctors basically ignore it entirely, and rather focus on the underlying issues instead. I've had it for many, many years that I know of (so much so that I never considered it to be anything odd or needing treatment) without any sort of progression of it.

But it's funny what we get used to, isn't it? I have a friend who sprouted livedo reticularis on her forearms one day (in air conditioning) and I thought it looked frightening; but I don't react at all when the same thing happens on my legs. I have to say that, in general, it looks a lot worse than what it is, but the lacy effect is really neat.

You'd want to make sure, of course, that you are screened or tested for any possible underlying causes. I have anticardiolipin antibodies and other stuff so for me it is filed under symptoms of antiphospholipid syndrome (APS).
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 northendpoet

northendpoet

    Bronze Member

  • Members
  • PipPip
  • 22 posts
  • Location:Washington

Posted 02 October 2009 - 09:48 AM

I'm a little um... concerned... bewildered... frightened. Past few weeks I noticed some mildly dark spots (2 of 'em) above my lips. This morning one of them looks like a bunch of small broken capillaries. It's about 1/2 the size of a penny and very pronounced now that it's red. So I got my big mirror (12x magnification) and the skin above my lips looks weird all way across. Darkened with light streaks. I have freckles, so at this point no one but me will see the oddness. Except for the new red spot which is hard to miss!

Any thoughts? Feels like some some crazy surprise almost every day lately. :blink: Makes my chest feel tight. So I went and got a bunch of movies and some soup and I'm going to put my sweats on and snuggle with my dogs and not look in the mirror anymore until I have to go back to work on Sunday. :jump-for-joy: This is me jumping for joy at the Caribbean Clam soup and sourdough bread with tons of butter and not having to go anywhere today.

Northend Poet
Northend Poet

#15 summer

summer

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 02 October 2009 - 12:55 PM

Welcome Northend Poet, unfortunately I am not able to help you regarding your spot above your lip. Maybe, you ought to mention it to your doctor when you next see them. I just wanted to give you a warm welcome, someone will probably chime in soon and be able to offer you some advice.

Shelley, I do have Limited/Crest Scleroderma, all my dermatologist and rheumatologist said was that sometimes people who have an autoimmune disease can get Livedo Reticularis. When I asked whether I need further investigations, they said no. I also mentioned that sometimes, my hand goes very red and swollen within seconds, and it feels as though the skin is about to split. She said that if it is a regular occurrence, I might need to increase my dosage of Amitriptyline, as it is neurological. When I came home and pondered with what she said, I am now not sure whether she thinks that it is all in my head.

I find it interesting about miscarriages and Livedo Reticularis, over the past 5 years, before I was diagnosed with Scleroderma, I have had 3 miscarriages. Luckily I have a 5 year old son within this time frame, he was born 5 weeks premature, but is otherwise healthy.

Regards

Summer